› Forums › General Melanoma Community › Looking for a support group in D.C.
- This topic has 21 replies, 6 voices, and was last updated 11 years ago by
Anonymous.
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- April 4, 2013 at 10:09 pm
After reading Janner's reply to a post yesterday, I've decided I'm ready to move beyond "worst case scenarios" – as she was explaining to a MPIP newcomer that this board is primarily active for newbies and people who are actively battling melanoma. That doesn't mean I'll stop reading this page – only that I don't plan to make it part of my "go-to" routine anymore.
After reading Janner's reply to a post yesterday, I've decided I'm ready to move beyond "worst case scenarios" – as she was explaining to a MPIP newcomer that this board is primarily active for newbies and people who are actively battling melanoma. That doesn't mean I'll stop reading this page – only that I don't plan to make it part of my "go-to" routine anymore.
The problem I'm having is that I don't know where to move on to. I know I still need help coping with my husband's melanoma battle, at least for this transition now that his participation in the GVAX melanoma vaccine trial at Johns Hopkins is coming to an end. "Watching and waiting" is not my cup of tea, but it seems that – assuming his scans in three weeks show he is still NED, which I do assume – there's nothing else we can do.
I'm interested in joining a melanoma support group in the D.C. area. Does anyone know of one? If not, is there anyone on this board who wants to get together and talk from time to time?
I've done a web search for support resources (see my blog post at http://www.hazelbecker.com/?q=content/looking-new-support-resource if you're interested) but it hasn't turned up anything. I'll check in with our oncologist about this when we see him next, but in the meantime, please email me off-list if you might want to get together, even if only once. I'm not sure I'm a long-term participant, but I could use some companionship at this point in the journey.
Thanks –
Hazel
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- April 4, 2013 at 10:29 pm
The MRF who hosts this site is located in DC. Why don't you contact them and see if they have anything they know of.
BTW, anyone is still welcome here but I was just trying to provide a point of perspective to the newbie. Especially for early stagers, there is only so much one can get from this site once you get past the shock of diagnosis.
Best wishes,
Janner
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- April 4, 2013 at 10:29 pm
The MRF who hosts this site is located in DC. Why don't you contact them and see if they have anything they know of.
BTW, anyone is still welcome here but I was just trying to provide a point of perspective to the newbie. Especially for early stagers, there is only so much one can get from this site once you get past the shock of diagnosis.
Best wishes,
Janner
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- April 4, 2013 at 10:29 pm
The MRF who hosts this site is located in DC. Why don't you contact them and see if they have anything they know of.
BTW, anyone is still welcome here but I was just trying to provide a point of perspective to the newbie. Especially for early stagers, there is only so much one can get from this site once you get past the shock of diagnosis.
Best wishes,
Janner
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- April 4, 2013 at 11:48 pm
Good idea about calling MRF – though my experience with national/international groups located here aren't very active on a local level.
And, I didn't take your comment on the other thread to mean I wasn't welcome. I've been dealing with some anxiety (understandably) that's much more prominent now that I'm not so active in Robert's fight against melanoma. I was suspecting that spending so much time on this site might be keeping me from moving on. I was interested in your email group for Stage 0-1 survivors, but that's not where we are – he's 2B, and his lesion was big so he's considered at high risk of recurrence. At least outwardly, he is able to put that risk aside and get on with his life – much more easily than I am. It's possible that getting together with others in a similar situation would help me through this transition, so that's what I'm looking for.
I appreciate your help. Thanks so much!
Hazel
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- April 4, 2013 at 11:48 pm
Good idea about calling MRF – though my experience with national/international groups located here aren't very active on a local level.
And, I didn't take your comment on the other thread to mean I wasn't welcome. I've been dealing with some anxiety (understandably) that's much more prominent now that I'm not so active in Robert's fight against melanoma. I was suspecting that spending so much time on this site might be keeping me from moving on. I was interested in your email group for Stage 0-1 survivors, but that's not where we are – he's 2B, and his lesion was big so he's considered at high risk of recurrence. At least outwardly, he is able to put that risk aside and get on with his life – much more easily than I am. It's possible that getting together with others in a similar situation would help me through this transition, so that's what I'm looking for.
I appreciate your help. Thanks so much!
Hazel
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- April 4, 2013 at 11:48 pm
Good idea about calling MRF – though my experience with national/international groups located here aren't very active on a local level.
And, I didn't take your comment on the other thread to mean I wasn't welcome. I've been dealing with some anxiety (understandably) that's much more prominent now that I'm not so active in Robert's fight against melanoma. I was suspecting that spending so much time on this site might be keeping me from moving on. I was interested in your email group for Stage 0-1 survivors, but that's not where we are – he's 2B, and his lesion was big so he's considered at high risk of recurrence. At least outwardly, he is able to put that risk aside and get on with his life – much more easily than I am. It's possible that getting together with others in a similar situation would help me through this transition, so that's what I'm looking for.
I appreciate your help. Thanks so much!
Hazel
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- April 5, 2013 at 12:28 pm
I so agree with you. The doctors say put this behind you and go on but it is so very hard. It's been 2 yrs since original diagnosis, and little things keep popping up. The anxiety is really high right now. I'm not sure why things seem to be piling up now. I'm not sure how to talk about my situation no one seems to understand. I don't really know anyone personally with melanoma. I'm glad I found this board but sometimes it scares me. I just have to get a handle on coping I guess.
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- April 5, 2013 at 1:21 pm
Hi,
if you go to http://www.melanomainternational.org which several people here also visit, there are forums for every stage, so you might want to check out the Stage III forum. (of course you might know all about the site already, so it's just a suggestion.)
all the best,
karen
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- April 5, 2013 at 1:21 pm
Hi,
if you go to http://www.melanomainternational.org which several people here also visit, there are forums for every stage, so you might want to check out the Stage III forum. (of course you might know all about the site already, so it's just a suggestion.)
all the best,
karen
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- April 5, 2013 at 1:21 pm
Hi,
if you go to http://www.melanomainternational.org which several people here also visit, there are forums for every stage, so you might want to check out the Stage III forum. (of course you might know all about the site already, so it's just a suggestion.)
all the best,
karen
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- April 5, 2013 at 12:28 pm
I so agree with you. The doctors say put this behind you and go on but it is so very hard. It's been 2 yrs since original diagnosis, and little things keep popping up. The anxiety is really high right now. I'm not sure why things seem to be piling up now. I'm not sure how to talk about my situation no one seems to understand. I don't really know anyone personally with melanoma. I'm glad I found this board but sometimes it scares me. I just have to get a handle on coping I guess.
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- April 5, 2013 at 12:28 pm
I so agree with you. The doctors say put this behind you and go on but it is so very hard. It's been 2 yrs since original diagnosis, and little things keep popping up. The anxiety is really high right now. I'm not sure why things seem to be piling up now. I'm not sure how to talk about my situation no one seems to understand. I don't really know anyone personally with melanoma. I'm glad I found this board but sometimes it scares me. I just have to get a handle on coping I guess.
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- April 5, 2013 at 2:33 pm
Have you called the American Cancer Society? They are quite good about knowing where support groups are. You could call the national number or the local one in DC. You might find that you are helped by a more generic support group if one dedicated to melanoma does not exist. The issues in a number of cancers for survivors and caregivers are very similar if not identical.
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- April 5, 2013 at 2:33 pm
Have you called the American Cancer Society? They are quite good about knowing where support groups are. You could call the national number or the local one in DC. You might find that you are helped by a more generic support group if one dedicated to melanoma does not exist. The issues in a number of cancers for survivors and caregivers are very similar if not identical.
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- April 5, 2013 at 2:33 pm
Have you called the American Cancer Society? They are quite good about knowing where support groups are. You could call the national number or the local one in DC. You might find that you are helped by a more generic support group if one dedicated to melanoma does not exist. The issues in a number of cancers for survivors and caregivers are very similar if not identical.
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- April 8, 2013 at 8:05 pm
Hi Hazel,
Support groups are definitely something that we are interested in pursuing. At this time, I'm not sure if we have the capacity or internal infrastructure to manage a support group that is 'ours', especially since we don't have a social worker or behavioral health expert on staff. We also don't have very many local volunteers and we're still in the process of discovering local patients and caregivers. I am currently planning a melanoma patient and caregiver symposium at Georgetown-Lombardi Cancer Center with Dr. Mike Atkins scheduled for September 21, 2013. I am hoping this will help drive our overal local outreach and impact. Hopefully you can make the meeting and meet some other individuals who are in your same boat.
All of that being said, I would love to pursue this and speak with Tim, our executive director, about it. There may be some liability/legal issues I'm not aware of, but I'm wondering if, nothing else, we could at least offer the actual meeting space for a group. Other questions would come into play though, such as 1) is it a caregiver support group? 2) is it a patient support group? 3) both (probably not ideal) 4) if patient, what stage?, etc. I can also speak with the melanoma team at Georgetown to see if maybe they have (or want to have) a melanoma support group.
In the meantime, please don't hesitate to reach out to me if I can be of any assistance. I can be reached at our office 202-347-9675 or at [email protected]. Thanks,
Shelby
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- April 8, 2013 at 8:05 pm
Hi Hazel,
Support groups are definitely something that we are interested in pursuing. At this time, I'm not sure if we have the capacity or internal infrastructure to manage a support group that is 'ours', especially since we don't have a social worker or behavioral health expert on staff. We also don't have very many local volunteers and we're still in the process of discovering local patients and caregivers. I am currently planning a melanoma patient and caregiver symposium at Georgetown-Lombardi Cancer Center with Dr. Mike Atkins scheduled for September 21, 2013. I am hoping this will help drive our overal local outreach and impact. Hopefully you can make the meeting and meet some other individuals who are in your same boat.
All of that being said, I would love to pursue this and speak with Tim, our executive director, about it. There may be some liability/legal issues I'm not aware of, but I'm wondering if, nothing else, we could at least offer the actual meeting space for a group. Other questions would come into play though, such as 1) is it a caregiver support group? 2) is it a patient support group? 3) both (probably not ideal) 4) if patient, what stage?, etc. I can also speak with the melanoma team at Georgetown to see if maybe they have (or want to have) a melanoma support group.
In the meantime, please don't hesitate to reach out to me if I can be of any assistance. I can be reached at our office 202-347-9675 or at [email protected]. Thanks,
Shelby
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- April 8, 2013 at 8:05 pm
Hi Hazel,
Support groups are definitely something that we are interested in pursuing. At this time, I'm not sure if we have the capacity or internal infrastructure to manage a support group that is 'ours', especially since we don't have a social worker or behavioral health expert on staff. We also don't have very many local volunteers and we're still in the process of discovering local patients and caregivers. I am currently planning a melanoma patient and caregiver symposium at Georgetown-Lombardi Cancer Center with Dr. Mike Atkins scheduled for September 21, 2013. I am hoping this will help drive our overal local outreach and impact. Hopefully you can make the meeting and meet some other individuals who are in your same boat.
All of that being said, I would love to pursue this and speak with Tim, our executive director, about it. There may be some liability/legal issues I'm not aware of, but I'm wondering if, nothing else, we could at least offer the actual meeting space for a group. Other questions would come into play though, such as 1) is it a caregiver support group? 2) is it a patient support group? 3) both (probably not ideal) 4) if patient, what stage?, etc. I can also speak with the melanoma team at Georgetown to see if maybe they have (or want to have) a melanoma support group.
In the meantime, please don't hesitate to reach out to me if I can be of any assistance. I can be reached at our office 202-347-9675 or at [email protected]. Thanks,
Shelby
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